Today is 4 months. It seems so unreal. Still such a blur, yet painful as could be, yet numb. It's still a confusing mix of emotions. I miss my baby so very much, and words can't even begin to describe how this journey thru grief and child loss has been. I simply can't find the words right now to fit the thoughts and emotions.
The rest of us you may ask?
Ariana is busy in 1st grade!!! I can't believe how big she's getting, so fast. She's loving school, as always. She is in class with some of her friends from the last 2 years and many new ones as well. She likes her teacher and is so happy that her classroom is right by a bathroom again this year! :) The first few weeks they did color learning and she had to wear a different color each day. She really enjoyed this and had a lot of fun matching her hair bows with each outfit.
Benjamin is getting settled into 3rd grade. His teacher this year seems like a good fit and is pushing to hold Ben just as accountable as all of the other kids in his class. She's been pushing hard to keep him drinking his water in school and to keep focused. She immediately put in place all of his necessary "supports" and even came up with some extra ways to extend out Ben's heavy work with some extra "chores" and responsibilities. Homework will begin this next week and that has always proven to be a tough one for Ben so we are hoping to come up with a good system for that. Health wise we have been pushing and slightly encouraging to keep him eating and drinking. Some struggles and I'm guessing he's still not quite perfect as his eyes are still pretty dark, but he's doing better than expected with transitioning back to eating at school. Michaella works hard to fill in the gaps when he's home of what we suspect he lacked at school.
Jace is settling in quickly into 5th grade!! He's been doing decent with keeping up with the work, but definitely had a few issues with some things picking up quickly academically. Jace started band this last week and is hoping to play the clarinet. He has also decided that he wants to join choir and has his first practice tomorrow. He's happy to be back with all of his school friends and has been using the phone to chat some.
Emily has quickly adjusted to 7th grade MIDDLE school!!! Talk about WOW. I can't believe I have a middle schooler! She loves switching classes and getting to move about the school. She quickly figured out her locker, which is a good thing as she has 3 of them. She is in all advanced classes and the workload has definitely proved to be quite a bit, but so far she's done very well keeping up with it. She's in choir and auditioning for honors choir as well. She is also in orchestra (of course) and they also meet 5 times a week. She's still doing private lessons once a week as well. It's definitely a lot to keep up with but she's doing well and this is what she wants. Doesn't leave a whole lot of free time, but she loves music so it's not so much work for her. She's made many new friends and is loving a larger group of kids to get to know. Her asthma has been a bit of a challenge but hoping that levels out soon. She met with the allergist last week and she made a few slight changes to her meds. Emily goes back tomorrow for full allergy testing, as her doc is considering putting her on allergy shots instead of the 3 oral meds she takes daily.
Lotte is busy adjusting to her senior year in the USA. She's enjoying her classes and meeting a lot of new friends. She is playing tennis so this keeps her busy every afternoon and has also been a great opportunity for her to meet friends as well. This past weekend she went to a Royals game with a few other exchange students. It was definitely a really cool experience for her!
Me. Hmmm. I am off of antibiotics for the first time in months. They ended up doing a CT scan of my kidneys last week as they were getting concerned after 5 infections. Good news...my kidneys looked good. Bad news....my liver didn't. The urologist sent all of the info to my primary doc, who sent it out to a specialist, who is scheduling an appt so we can figure out what is going on and what needs to be done. We are trying to process all of this and are honestly not sure how we feel.
Bob has had a rough week and a half. His GI system is in a bad cycle and they couldn't get it back under control like they usually can with a few med changes. They ended up scheduling a colonoscopy and EGD. He had that today. We now have to wait 2 to 3 wks for the biopsy results. In the meantime they changed up some meds to see if that helps any. He had a rougher time with anesthesia and all but is resting this evening.
So that's us in a nutshell right now.
I will get back to blogging more consistently...I promise. I'm just trying to process so much right now and quite honestly I'm struggling.
More soon.
Always and forever tiny man!
Wednesday, August 28, 2013
Wednesday, July 17, 2013
Life Updates
What's going on in our household?
Emily ~ She's been pretty busy babysitting. She's still busy as ever with her violin practice and private summer lessons. She singing constantly and can never get enough of music. She has been reading a fair amount as well. She's still working on her duct tape projects and has started making some friendship bracelets again. She's preparing for the start of 7th grade in just a few short weeks. She has her rougher days where her grief all but overwhelms her. At her age she's pretty open about simply saying she's upset and missing tiny.
Jace ~ He's busy as always. Constantly moving. He's been joining me at the gym frequently and has made some friends there that he enjoys chatting with. He works out some, sips tea, and visits with friends. It's his own time and for that he really enjoys it. He's getting ready to start 5th grade in just a few short weeks as well. His grief surfaces more at night when he stops moving, sometimes making sleep a bit tough.
Benjamin ~ He's in a mood lately. He spends most of his days in his footed pj's playing his electronics. We've had alot of issues with him eating and drinking enough. Last week we ended up having to take him in and the doc attempted IV access as he was so dehydrated. We are fighting constantly to keep him drinking as that is top priority. His doc thinks it's his way of dealing with grief. Ben is getting ready to start the 3rd grade in just a few weeks.
Ariana ~ She's girly as ever. It's all princess games, girly dress up, and baby dolls. She wears dresses every opportunity she gets and believes all of her dolls should do the same. Her american girl dolls now own more shoes than she does!! She deals with her grief by talking about death constantly. She is the first to chat about Eli as though he's coming back any moment, and has no problem openly talking about her memories. She will be starting 1st grade in just a few short weeks.
Hopkins ~ Our little furry friend is busy as always. He's almost housebroken and loves staying close to one of us. He is a little over 3 months old and loves to run thru the house at full speed. He can jump on the couch and spends all of his nap times curled up on the couch next to whoever might be sitting. He loves his toys and has learned to play fetch with a tennis ball.
Bob ~ Busy working as always. He's on a more stable work schedule so we actually get to see him a bit more consistently. The stress of his job is definitely still high. When home he and I have been working out together and going on long walks.
Me ~ I'm here. I read alot. I crochet. I play games with bob or the kids. I have been working out twice a week with a personal trainer and then as many more times as possible each week on my own. I'm working on running and hoping to run my first 5K the end of Sept. It's something I'm finding to really enjoy. I still can't seem to keep up with cooking, which results in alot of ordering food. The kids are loving that for whatever it's worth. I'm learning to "hide" my grief a bit more and make it thru the days. I can atleast finally give a good socially acceptable answer when the customary hi how are you questions come along.
We are starting family grief counseling classes where we can be around other families who have experienced grief of their own. We are looking forward to sharing experiences with others, even though it's super nerve wracking as well.
It's been 2 months, 2 weeks, 5 days, 14 hrs, 45 min and 20 sec OR 11 wks 3 days 14 hrs. We are surviving the best we know how and that's really all I can say at this point.
Life will be changing for us in the next few weeks. We are excited and a bit apprehensive for these changes. Either way we know that change is inevitable and necessary.
oh and as always we are constantly walking around eyes open, witnessing our tiny hero in the butterflies that hang all around us, the lone bird who sits on the line outside our house staring at our home, the lone bird that circles over his grave all so often, then glitter we find around, the wind in his chimes, and the rain that seems to always fall at the perfect moments that our souls weep. Our eyes and ears and hearts are always open for signs of our little man!
Emily ~ She's been pretty busy babysitting. She's still busy as ever with her violin practice and private summer lessons. She singing constantly and can never get enough of music. She has been reading a fair amount as well. She's still working on her duct tape projects and has started making some friendship bracelets again. She's preparing for the start of 7th grade in just a few short weeks. She has her rougher days where her grief all but overwhelms her. At her age she's pretty open about simply saying she's upset and missing tiny.
Jace ~ He's busy as always. Constantly moving. He's been joining me at the gym frequently and has made some friends there that he enjoys chatting with. He works out some, sips tea, and visits with friends. It's his own time and for that he really enjoys it. He's getting ready to start 5th grade in just a few short weeks as well. His grief surfaces more at night when he stops moving, sometimes making sleep a bit tough.
Benjamin ~ He's in a mood lately. He spends most of his days in his footed pj's playing his electronics. We've had alot of issues with him eating and drinking enough. Last week we ended up having to take him in and the doc attempted IV access as he was so dehydrated. We are fighting constantly to keep him drinking as that is top priority. His doc thinks it's his way of dealing with grief. Ben is getting ready to start the 3rd grade in just a few weeks.
Ariana ~ She's girly as ever. It's all princess games, girly dress up, and baby dolls. She wears dresses every opportunity she gets and believes all of her dolls should do the same. Her american girl dolls now own more shoes than she does!! She deals with her grief by talking about death constantly. She is the first to chat about Eli as though he's coming back any moment, and has no problem openly talking about her memories. She will be starting 1st grade in just a few short weeks.
Hopkins ~ Our little furry friend is busy as always. He's almost housebroken and loves staying close to one of us. He is a little over 3 months old and loves to run thru the house at full speed. He can jump on the couch and spends all of his nap times curled up on the couch next to whoever might be sitting. He loves his toys and has learned to play fetch with a tennis ball.
Bob ~ Busy working as always. He's on a more stable work schedule so we actually get to see him a bit more consistently. The stress of his job is definitely still high. When home he and I have been working out together and going on long walks.
Me ~ I'm here. I read alot. I crochet. I play games with bob or the kids. I have been working out twice a week with a personal trainer and then as many more times as possible each week on my own. I'm working on running and hoping to run my first 5K the end of Sept. It's something I'm finding to really enjoy. I still can't seem to keep up with cooking, which results in alot of ordering food. The kids are loving that for whatever it's worth. I'm learning to "hide" my grief a bit more and make it thru the days. I can atleast finally give a good socially acceptable answer when the customary hi how are you questions come along.
We are starting family grief counseling classes where we can be around other families who have experienced grief of their own. We are looking forward to sharing experiences with others, even though it's super nerve wracking as well.
It's been 2 months, 2 weeks, 5 days, 14 hrs, 45 min and 20 sec OR 11 wks 3 days 14 hrs. We are surviving the best we know how and that's really all I can say at this point.
Life will be changing for us in the next few weeks. We are excited and a bit apprehensive for these changes. Either way we know that change is inevitable and necessary.
oh and as always we are constantly walking around eyes open, witnessing our tiny hero in the butterflies that hang all around us, the lone bird who sits on the line outside our house staring at our home, the lone bird that circles over his grave all so often, then glitter we find around, the wind in his chimes, and the rain that seems to always fall at the perfect moments that our souls weep. Our eyes and ears and hearts are always open for signs of our little man!
Tuesday, July 9, 2013
Journeying thru Grief
"Time to quit living in the shadow of the dead and get back to the world of the living. You have 4 other kids."
"Time to quit wrapping yourself up in the death of the dead and get back to playing a meaningful role in the life of the living."
These are 2 comments that were posted on my last post, both by the same person with a fake name and profile. I really could care less who posted them, but I do care for myself, my family and for ALL the other families who have lost someone close. This isn't how it works. These are the types of things that should NEVER be said to someone going thru loss, thru the grieving process.
These comments were posted to my family 9 weeks and 6 days after our son, our brother, our tiny hero passed away in our arms right in front of our eyes. 9 weeks and 6 days after we watched our child go from full of life to struggling for every breath he took to not breathing to his heart finally stopping. After we watched the doctors work for 14 hrs trying to save our baby as his life slipped away, as the doctors and nurses and our family tried to desperately grasp as our grip loosened. As we watched them begin CPR, as we screamed for them to stop, as the tubes and wires were ripped off our baby. As we spent our final moments with our son, our brother, wrapped in our arms in a twin hospital bed in the middle of ICU. As hrs later we bathed our hero for the final time, dressing him in his beautiful pj's, making sure each hair on his little head was perfect, that all of his lotions and tubies and covers were properly in place. As we walked out of that hospital hand in hand pushing an empty wheelchair, never to be filled again. As we walked into our home without our baby, noticing all the quiet empty spots. As we planned a funeral for our 3 1/2 yr old baby. As we kissed his cold head and closed his casket for the last time. As we sat thru a funeral, an event that you always picture for someone who has lived a full life, yet for us was a small coffin, and teddy bears, and children's books, and stories of peek a boo and messing with the darned washer. As we carried that way to light coffin to it's final resting place. As they lowered the coffin into the vault and the vault into the ground. As we watched Ben feel emotions and cry, something we have never seen. As we witnessed Jace try to jump into the grave because he couldn't handle his emotions. As Emily had asthma attack after asthma attack as overwhelming tears constantly racked her body. As Ari kept asking when we got to take Eli home. As I crumbled to the ground because my legs could no longer stand. As Bob shook with emotions to much for him to handle. As tears poured down our faces and our friends and families as well.
Do NOT tell us to get over it. Move on. Join the land of the living. What is it exactly that you think we do each day?
We cook, eat, play games, read books, swim, go to the movies, eat out, shop, go to museums, go to the park, workout, run, walk, goof off on electronics, clean house, go to work, babysit, have date nights, have dinner and game night with friends, pay bills, talk on the phone, crochet, practice violin, get together with friends, have sleepovers, fight sometimes, go to time outs, get in trouble, visit with family, celebrate holidays and birthdays, go to doctor appts, go to school events....visit our tiny's grave and mourn and cry and laugh and tell stories and look at pictures and GRIEVE. That's exactly what we should be doing.
We have been thru hell and we are doing a damn good job of making it thru each and every day. A part of us is missing and we are allowed to grieve and live at the exact same time.
Please allow us to grieve. Please allow other families to grieve too. Losing a child, sibling, grandchild, spouse, parent, grandparent, friend, and so many other important people in our lives is HARD. It's painful. It's brutal. Allow the grief process to happen as it happens. Grief is vital and so is good support. Be the support that we and so many others on the journey of grief NEED.
Wednesday, July 3, 2013
Funeral and Burial Video
I have been meaning to share this video for a few weeks but just haven't yet. I'm honestly not sure why.
Like all of the videos it is raw and unedited photos. Our amazing photographer friends both spent the day capturing Eli's funeral and burial. They got the laughs, the tears, and everything in between! They are beautiful!
Be sure to have your speakers on. For those who attended the funeral it will sound familiar, for those who didn't attend, the songs in this video are the 4 songs we chose for Eli's service.
Like all of the videos it is raw and unedited photos. Our amazing photographer friends both spent the day capturing Eli's funeral and burial. They got the laughs, the tears, and everything in between! They are beautiful!
Be sure to have your speakers on. For those who attended the funeral it will sound familiar, for those who didn't attend, the songs in this video are the 4 songs we chose for Eli's service.
Wednesday, June 26, 2013
Passing of Time
I have a countdown timer on my phone. We have used it for years to countdown to birthdays, anniversaries, and major holidays. It's something we have always enjoyed to help build and keep excitement for these events coming. The passing of time has always meant we are closer and closer to the exciting event that we have waited so long for.
I now have the opposite; yet my brain and heart and soul can't wrap around the concept. The counter on my phone now counts from the date we lost our beautiful boy. It has NO ending. Yet when I look at it, when I see a calendar, or hear the date spoken, or when my body simply feels the passing of time I think, ok we made it 8 wks, just a few more that we have to make it and then I get my baby...oh wait. There is no, and then. Yet I can't wrap that up inside of me into a package that I can absorb. I simply can't.
The counter of losing my baby never ends. How is that? How can I be expected to deal with this day in and day out with no end? With no goal of making it thru? No reward at the end. No happy moment or time. It simply counts until the day that I die. How can my heart and soul be expected to with stand that?
Every morning I wake and for those few brief moments in between sleep and awake I listen for the swish of his machines, the tick tick tick of the monitor, the slightest crackle of his video monitor. I expect it to be there. Every single morning I have to again come to the realization that he's gone. My baby isn't there. The never-ending counter is ticking the wrong direction into oblivion. Every night I go to bed knowing that my baby is gone, yet every morning I must learn all over again that my arms are empty.
It's cruel. Beyond cruel. The life that I now live. Having to relive my baby's passing every morning. Having to watch the timer count to nothing, when only a click of a screen away it's counting to our birthdays and anniversaries, and holidays.
I don't have to make it to a certain day. I have to make it until the day I die and I get to go join my baby. I don't want this to be my life. I don't want to wake up each day ready to go snuggle my beautiful boy and brush his blonde hair back from his face every morning with my fingers so I can kiss his little forehead; only to slam into the brick wall off child loss so hard that it takes my breath away.
This isn't the life that I asked for or imagined.
I wouldn't give up the time I had with my Tiny Warrior for anything, but this pain is one that I can't imagine carrying for the rest of my life. I can only watch the counter tick into oblivion, and do my best to keep up with each and every day.
The passing of time hurts so very much.
tick tock tick tock
I now have the opposite; yet my brain and heart and soul can't wrap around the concept. The counter on my phone now counts from the date we lost our beautiful boy. It has NO ending. Yet when I look at it, when I see a calendar, or hear the date spoken, or when my body simply feels the passing of time I think, ok we made it 8 wks, just a few more that we have to make it and then I get my baby...oh wait. There is no, and then. Yet I can't wrap that up inside of me into a package that I can absorb. I simply can't.
The counter of losing my baby never ends. How is that? How can I be expected to deal with this day in and day out with no end? With no goal of making it thru? No reward at the end. No happy moment or time. It simply counts until the day that I die. How can my heart and soul be expected to with stand that?
Every morning I wake and for those few brief moments in between sleep and awake I listen for the swish of his machines, the tick tick tick of the monitor, the slightest crackle of his video monitor. I expect it to be there. Every single morning I have to again come to the realization that he's gone. My baby isn't there. The never-ending counter is ticking the wrong direction into oblivion. Every night I go to bed knowing that my baby is gone, yet every morning I must learn all over again that my arms are empty.
It's cruel. Beyond cruel. The life that I now live. Having to relive my baby's passing every morning. Having to watch the timer count to nothing, when only a click of a screen away it's counting to our birthdays and anniversaries, and holidays.
I don't have to make it to a certain day. I have to make it until the day I die and I get to go join my baby. I don't want this to be my life. I don't want to wake up each day ready to go snuggle my beautiful boy and brush his blonde hair back from his face every morning with my fingers so I can kiss his little forehead; only to slam into the brick wall off child loss so hard that it takes my breath away.
This isn't the life that I asked for or imagined.
I wouldn't give up the time I had with my Tiny Warrior for anything, but this pain is one that I can't imagine carrying for the rest of my life. I can only watch the counter tick into oblivion, and do my best to keep up with each and every day.
The passing of time hurts so very much.
tick tock tick tock
Thursday, June 6, 2013
Smiles and Laughter
I NEED to make sure that everyone understand that it wasn't all tears. We smiled. We laughed.
This was as we were getting ready to walk into the service and the wrong song started playing, It was the "Signing Time with Alex and Leah"
This was during the service. Pastor was talking about the ornery side of Eli. It was all about Eli's troublemaker times and he combined and used all the little stories from Eli's life that we all sat around the living sharing one afternoon during the week before. It was am amazing time a midst a week of turmoil.
This was during the service when Pastor talked about how very much Eli loved playing peek a boo!!!
These were right before the service, in the family room at the church that was set aside for the immediate family and close friends. I honestly don't even remember now what was said, but it was something about Eli and we all just laughed and laughed.
This was as we were getting ready to walk into the service and the wrong song started playing, It was the "Signing Time with Alex and Leah"
This was during the service. Pastor was talking about the ornery side of Eli. It was all about Eli's troublemaker times and he combined and used all the little stories from Eli's life that we all sat around the living sharing one afternoon during the week before. It was am amazing time a midst a week of turmoil.
This was during the service when Pastor talked about how very much Eli loved playing peek a boo!!!
This was after we carried Eli's coffin from the service to the hearse. Mike (Dr Lewis) told Bob that he was so strong. Bob said heck no. Mike said you should win an Emmy your acting so strong!
This was graveside. I wanted us to hold Eli one last time, the 4 of us. It was me and Bob, Lauren (Eli's primary nurse) and Mike (Dr Lewis, Eli's primary doc). I commented that it was our last time to carry the weight of Eli together. I imagined it weighing more and said so. Mike looked at Lauren and I and said "Did one of you miss a feed? Didn't you run enough IV fluids. Must be why he lost some weight." It was exactly what the 4 of us needed at that very moment.
As Eli's coffin was set atop the vault, Emily could no longer control her emotions, which means she couldn't control her asthma either. I did what I had done countless times that week. I started singing and signing the ABC song. This was Eli's favorite song and the first one we ever learned to sign. He would clap and sign "more" repeatedly for us to do it over and over. All week it worked to calm all of us down.
This was the balloon release. Eli's mickey balloon and a few others got stuck into the tree, because of the wind that day. Just a few weeks before the kids frisbee had gotten stuck in the and Michaella and I pulled our van under the tree climbed on top of it with ladders and sticks and brooms and finally got it out. Eli had stood in the doorway watching us out the window clapping and cheering the entire time. Bob was less than thrilled with us when he got home, but once we told him how Eli clapped and cheered he couldn't help but smile. Eli got us out of so much trouble that day!
As a side note Eli's balloon got free somehow after our family had left.
Visiting with family and friends afterwards talking about Eli, and random other moments of laughter during it all.
I guess my reason for sharing these is so others know that we have found moments of laughter and that it's ok to laugh. We sure did.
There were many evenings during the week before late at night where the kids were in bed and all of us adults sat up getting our "homework" done each evening. At some points someone would say or do something and we would all laugh so hard until tears were pouring down our faces. Moments that I can't even remember having in the last few years. At points we felt guilty and at points it felt so good to laugh.
It was needed.
I just wanted to share that it wasn't all tears. Our little man was ALWAYS smiling and there were times where so were we.
and wow do I miss his smiles.
Wednesday, June 5, 2013
Broken
There are so many pieces of that night that I didn't include in the What Happened post.
Pieces I'm ashamed of. Pieces I feel so guilty about. Pieces that hurt so very deeply and so badly that I feel like my heart stops too when I think of them.
They are pieces I thought only I felt, pieces I thought that I was so weak that I couldn't handle and that others were so much braver and stronger.
In the few weeks that have already passed I have spoken to other moms. Each of our journeys are as unique as our fingerprints but that being said there are some things that were the same over and over and over. Surprisingly some of the things I am so ashamed of and feeling so weak about are some of the big things I keep hearing over and over from others.
Others are just as afraid and ashamed to say these things. It's so sad that we are all so scared to say these things out loud for others following in our painful footsteps to know. For others who come after us to see that these things are normal, these things are ok, these things don't make us bad. These things come from intense pain, so much shattering pain that our bodies simply can NOT handle it.
I reminded myself that I have always vowed to stay open and honest. I have vowed to share our journey, raw and unedited. I don't want others to think they are alone. So here it is. Raw.
When Eli had his first seizure I collapsed in the hallway against a chair. I couldn't be in the room. They got him "stable" at that point and I went back in.
When Eli had his huge seizure in our arms and stopped breathing I ran out of the room and collapsed on the floor screaming. Someone came to me and tried to help me. I couldn't move. I could only scream. I stayed in the hall for probably an hr. 2 nurses and a chaplain held me up. I couldn't move. I couldn't go in Eli's room, I couldn't even look in there. I could hear them. I could hear the beeping. I could see the monitor in the hall flashing 4-6 for his pulse ox for almost 1 hr. I could only yell questions at my husband. I couldn't step in there first hand to see what was happening. I made my husband be there with Eli and all of the doctors standing at the end of our sons bed while they intubated and bagged him. I grabbed his nurse at one point as he was trying to get to eli and told him to save my baby.
I couldn't walk or stand without holding on to someone or something. I felt like nothing was real. I didn't feel as though my feet were on the ground or that the world was holding me upright.
At one point during the night I had to go to the waiting room. I layed down. I couldn't sleep. I was so dizzy and nauseous I could no longer move. I layed with a blanked pushed over my mouth as hard as I could to try to keep from throwing up and to stifle the screams that were inside of me.
When my husband came to me after maybe 30 or 45 minutes he told me that they were trying their last thing. The hail mary vent. He said it wasn't working. He said I needed to come. I laid there staring blankly. I didn't flinch. I didn't cry. I didn't move. Finally when I was able to move I first walked to the bathroom to be ill, before barely walking back to my sons room.
I went to Eli. I begged and pleaded with him to be strong. I told him over and over how strong he was. How he had to keep fighting. I never once told him that it was ok. I simply pleaded with him to keep fighting. It never once crossed my mind how much pain he might be in, I just pleaded with him to not give up. I cried a million tears on him.
I made his primary doc make some calls. I made him decide when to bring the kids. I made him talk to the kids. I couldn't do it. He sat them down. He talked to them. He told them what was happening. I sat there blankly crying and staring.
I called up a good friend of ours early in the evening. She spent the entire night with us. She had to go thru the torture of such a night. Another friend had to come up with the children. A good friend of ours had to be with us all night taking photos of every moment. I pulled people into this night that didn't have to be there. I asked them to be there because I was to weak but this made them have to experience this pain too.
I made my husband stay at the foot of Eli's bed. I didn't let him leave him because I was to weak to be there. My husband didn't pee, not 1 single time in 16 hrs. He stayed there. He watched every single second, without his wife by his side at times.
I didn't research anything. I didn't check the meds they were giving. I didn't push for answers and options and help. I didn't fight and ask for second opinions. I didn't push for a miracle. I didn't question everything. I didn't ask for his sugar checks and temps. I didn't. I don't know what pain meds they gave my baby. For the first time in his life I can't tell you any of the medical things happening. All I know is my baby was dying right before my eyes and so was I.
I told the PICU doc and our doc and the nurse that I was dying with Eli. I told them that if and when he died I just knew that I would too. His PICU doc grabbed my shoulders and looked at me with a pain in his eyes that I had no doubt what he was going to say. He had lost a child too. He said he had felt that same feeling.
We stood in the hall many times. His primary doc showed us Eli's chest xrays as he explained what was happening. He had requested from the ICU doc for him to be the one to talk to us. He told us it was ARDS. We begged for a fix. He told us that ECMO may have been a very small possibility for a "healthy" person but not for Eli. He also told us that nobody in our state does it and Eli wasn't stable enough to transfer to a CT scan let alone another hospital. He told us we were out of options. I just stared blankly at him. The next words out of his mouth were about not wanting Eli to suffer. He said at some point Eli's heart would stop. DNR. We said we don't know. We asked him what to do. At this point we couldn't even think. We couldn't. He stepped away to talk to the PICU doc. Bob and I stayed in the hall outside of Eli's open PICU room talking. At that exact moment the alarms went off, Eli's heart had stopped while we stood in the hall discussing the DNR. I ran to the doctor. I didn't run to my baby's side. I ran for the doctor and literally drug him by the arm to Eli's room. I stood in the hall while everyone flooded my baby. My body couldn't move until I heard the PICU doc yell start CPR.
Then I was all movement. I flew to Eli's bedside with my husband and Eli's doc right behind me, as I yelled stop. The PICU doc grabbed me. He said you have to say it. I begged him. I screamed at him that I hadn't held my baby yet. I kept yelling that over and over. He shook my shoulder and said you have to say it. The moment the words were out of my mouth my kids screamed and ran for Eli. I broke them. I broke them. I made the call. I said those words. The docs and nurses and respiratory and I all started literally ripping the tape and cords and monitors and lines off of my baby. I grabbed him and they swung me around and shoved me on the bed with him, bob being pushed onto the bed with us. They shoved the kids forward on top of us. I held him. I held him so close and so tight. I couldn't let go. I couldn't let anyone else have those last seconds with him. Bob had his arms around both of us. the kids arms and faces all around us. At some point we removed the tape and pulled the intubation tube out of his mouth and threw it across the room. The nurse removed the cath for us so it was simply our baby.
I couldn't move him. We stayed that way for sooo long. In the end Lauren had to lift him off of me because I couldn't do it. I was the last one to hold my baby.
I am not strong. I'm not. I'm still not sure if that's ok. I feel as though I let my baby down. I feel as though I abandoned him. His heart stopped when he was laying in that bed alone and we were in the hall going back and forth over that fucking DNR. We should have been there with him. He shouldn't have been alone.
and please don't think that my fuck ups stopped that night. I was numb. I didn't help my kids. I didn't help my family. i didn't check in with my friends that we had up there that night with us to see if they were ok. i shut down. I cried. i refused food. I walked around blank.
I couldn't move at the funeral and froze in the doorway. i had to be held up by a few people and shoved down the aisle. I collapsed graveside pulling many people down with me. I watched as one of my sons tried to jump into the grave yet I did nothing. I didn't even know that my other son was crying for one of the first times in his life and NOBODY was with him or knew because they were attending to me. We found this out after the fact in pictures. I never checked in to make sure others were ok.
Then I shut down for weeks. No tears no emotion no nothing.
now the tears are uncontrollable and it makes the kids upset too. so then I try to hide my tears when they fall.
so again I say. I'm not strong. I'm not perfect. I'm human. I'm shattered. I'm forever broken.
I also know for a fact that so are others. so i guess my point in sharing this is for those like me, those like us, please know that this is normal, this is ok, you aren't alone. we are all here walking this road. we are broken too.
Pieces I'm ashamed of. Pieces I feel so guilty about. Pieces that hurt so very deeply and so badly that I feel like my heart stops too when I think of them.
They are pieces I thought only I felt, pieces I thought that I was so weak that I couldn't handle and that others were so much braver and stronger.
In the few weeks that have already passed I have spoken to other moms. Each of our journeys are as unique as our fingerprints but that being said there are some things that were the same over and over and over. Surprisingly some of the things I am so ashamed of and feeling so weak about are some of the big things I keep hearing over and over from others.
Others are just as afraid and ashamed to say these things. It's so sad that we are all so scared to say these things out loud for others following in our painful footsteps to know. For others who come after us to see that these things are normal, these things are ok, these things don't make us bad. These things come from intense pain, so much shattering pain that our bodies simply can NOT handle it.
I reminded myself that I have always vowed to stay open and honest. I have vowed to share our journey, raw and unedited. I don't want others to think they are alone. So here it is. Raw.
When Eli had his first seizure I collapsed in the hallway against a chair. I couldn't be in the room. They got him "stable" at that point and I went back in.
When Eli had his huge seizure in our arms and stopped breathing I ran out of the room and collapsed on the floor screaming. Someone came to me and tried to help me. I couldn't move. I could only scream. I stayed in the hall for probably an hr. 2 nurses and a chaplain held me up. I couldn't move. I couldn't go in Eli's room, I couldn't even look in there. I could hear them. I could hear the beeping. I could see the monitor in the hall flashing 4-6 for his pulse ox for almost 1 hr. I could only yell questions at my husband. I couldn't step in there first hand to see what was happening. I made my husband be there with Eli and all of the doctors standing at the end of our sons bed while they intubated and bagged him. I grabbed his nurse at one point as he was trying to get to eli and told him to save my baby.
I couldn't walk or stand without holding on to someone or something. I felt like nothing was real. I didn't feel as though my feet were on the ground or that the world was holding me upright.
At one point during the night I had to go to the waiting room. I layed down. I couldn't sleep. I was so dizzy and nauseous I could no longer move. I layed with a blanked pushed over my mouth as hard as I could to try to keep from throwing up and to stifle the screams that were inside of me.
When my husband came to me after maybe 30 or 45 minutes he told me that they were trying their last thing. The hail mary vent. He said it wasn't working. He said I needed to come. I laid there staring blankly. I didn't flinch. I didn't cry. I didn't move. Finally when I was able to move I first walked to the bathroom to be ill, before barely walking back to my sons room.
I went to Eli. I begged and pleaded with him to be strong. I told him over and over how strong he was. How he had to keep fighting. I never once told him that it was ok. I simply pleaded with him to keep fighting. It never once crossed my mind how much pain he might be in, I just pleaded with him to not give up. I cried a million tears on him.
I made his primary doc make some calls. I made him decide when to bring the kids. I made him talk to the kids. I couldn't do it. He sat them down. He talked to them. He told them what was happening. I sat there blankly crying and staring.
I called up a good friend of ours early in the evening. She spent the entire night with us. She had to go thru the torture of such a night. Another friend had to come up with the children. A good friend of ours had to be with us all night taking photos of every moment. I pulled people into this night that didn't have to be there. I asked them to be there because I was to weak but this made them have to experience this pain too.
I made my husband stay at the foot of Eli's bed. I didn't let him leave him because I was to weak to be there. My husband didn't pee, not 1 single time in 16 hrs. He stayed there. He watched every single second, without his wife by his side at times.
I didn't research anything. I didn't check the meds they were giving. I didn't push for answers and options and help. I didn't fight and ask for second opinions. I didn't push for a miracle. I didn't question everything. I didn't ask for his sugar checks and temps. I didn't. I don't know what pain meds they gave my baby. For the first time in his life I can't tell you any of the medical things happening. All I know is my baby was dying right before my eyes and so was I.
I told the PICU doc and our doc and the nurse that I was dying with Eli. I told them that if and when he died I just knew that I would too. His PICU doc grabbed my shoulders and looked at me with a pain in his eyes that I had no doubt what he was going to say. He had lost a child too. He said he had felt that same feeling.
We stood in the hall many times. His primary doc showed us Eli's chest xrays as he explained what was happening. He had requested from the ICU doc for him to be the one to talk to us. He told us it was ARDS. We begged for a fix. He told us that ECMO may have been a very small possibility for a "healthy" person but not for Eli. He also told us that nobody in our state does it and Eli wasn't stable enough to transfer to a CT scan let alone another hospital. He told us we were out of options. I just stared blankly at him. The next words out of his mouth were about not wanting Eli to suffer. He said at some point Eli's heart would stop. DNR. We said we don't know. We asked him what to do. At this point we couldn't even think. We couldn't. He stepped away to talk to the PICU doc. Bob and I stayed in the hall outside of Eli's open PICU room talking. At that exact moment the alarms went off, Eli's heart had stopped while we stood in the hall discussing the DNR. I ran to the doctor. I didn't run to my baby's side. I ran for the doctor and literally drug him by the arm to Eli's room. I stood in the hall while everyone flooded my baby. My body couldn't move until I heard the PICU doc yell start CPR.
Then I was all movement. I flew to Eli's bedside with my husband and Eli's doc right behind me, as I yelled stop. The PICU doc grabbed me. He said you have to say it. I begged him. I screamed at him that I hadn't held my baby yet. I kept yelling that over and over. He shook my shoulder and said you have to say it. The moment the words were out of my mouth my kids screamed and ran for Eli. I broke them. I broke them. I made the call. I said those words. The docs and nurses and respiratory and I all started literally ripping the tape and cords and monitors and lines off of my baby. I grabbed him and they swung me around and shoved me on the bed with him, bob being pushed onto the bed with us. They shoved the kids forward on top of us. I held him. I held him so close and so tight. I couldn't let go. I couldn't let anyone else have those last seconds with him. Bob had his arms around both of us. the kids arms and faces all around us. At some point we removed the tape and pulled the intubation tube out of his mouth and threw it across the room. The nurse removed the cath for us so it was simply our baby.
I couldn't move him. We stayed that way for sooo long. In the end Lauren had to lift him off of me because I couldn't do it. I was the last one to hold my baby.
I am not strong. I'm not. I'm still not sure if that's ok. I feel as though I let my baby down. I feel as though I abandoned him. His heart stopped when he was laying in that bed alone and we were in the hall going back and forth over that fucking DNR. We should have been there with him. He shouldn't have been alone.
and please don't think that my fuck ups stopped that night. I was numb. I didn't help my kids. I didn't help my family. i didn't check in with my friends that we had up there that night with us to see if they were ok. i shut down. I cried. i refused food. I walked around blank.
I couldn't move at the funeral and froze in the doorway. i had to be held up by a few people and shoved down the aisle. I collapsed graveside pulling many people down with me. I watched as one of my sons tried to jump into the grave yet I did nothing. I didn't even know that my other son was crying for one of the first times in his life and NOBODY was with him or knew because they were attending to me. We found this out after the fact in pictures. I never checked in to make sure others were ok.
Then I shut down for weeks. No tears no emotion no nothing.
now the tears are uncontrollable and it makes the kids upset too. so then I try to hide my tears when they fall.
so again I say. I'm not strong. I'm not perfect. I'm human. I'm shattered. I'm forever broken.
I also know for a fact that so are others. so i guess my point in sharing this is for those like me, those like us, please know that this is normal, this is ok, you aren't alone. we are all here walking this road. we are broken too.
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